xmlns:og='http://ogp.me/ns#' Yeah. Good Times.: And I still would

Saturday, May 7, 2011

And I still would

The Thinking Person's Guide to Autism, on their Facebook page, posted a link to the BlogHer article that featured my "Yes I would" thingy about autism. So now all these people are coming over here, and all those other places, and giving me some shit for what I said.

But it's kind of like nobody actually read what I wrote and is just having a visceral reaction to the idea of the pill in general, so I'm going to take a moment to re-state everything I said, but this time in bullet points, to make it easier to understand and to eliminate the straw man.

  • My son is sweet and awesome and I love him exactly the way he is right now
  • My life has actually benefited from my child having autism. Without autism I believe MY life would be worse off. But this isn't about me.
  • Autism causes my child sensory and emotional pain
  • I would like for him to not be in pain, and if there was a pill that would do that, I would give it to him
  • After the pill, his sensory and emotional pain would be gone and he would STILL be the same person he is now: sweet and awesome. 

EDIT: I just put this in the comments and I'm putting it here, too, so that it won't get missed:

I have no problem with somebody disagreeing with me, particularly in a well considered way. You know me and you know that I encourage people to give me their opinion regardless of whether or not it will be controversial or if I agree with it. It's not that difficult for me to have my work out there on an emotional level, to tell you the truth. I've been at this online thing for a LONG time and as long as people are respectful, I'm happy with disagreement.

What I DO have a problem with is people who don't read what I actually wrote, who formulate an argument that I didn't make and then attack me for something I didn't say. That I have a big problem with.

This post isn't for what anybody said over at BlogHer or even what was said on Facebook, this post is for the people who commented HERE.

EDIT2: There's something really wonky about my commenting dealie here. Comments get posted but then they seem to disappear on their own somehow. Most of them are mine, since I comment here more than anybody else, and I have no idea what the deal is. SO, if you've commented, and it's gone now, it's not because I deleted it, because I don't delete comments, it just went away for some reason. I'm sorry about that! I always get an email notification which contains the contents of your comment so if that happened to you, let me know and I can send it to you for re-posting.



      Comments (27)

      Loading... Logging you in...
      • Logged in as
      I said it before, I will say it again. I AM WITH YOU, SISTA!!
      My recent post Things That Happen In Library Bathrooms
      Handflapper's avatar

      Handflapper · 725 weeks ago

      Exactly.
      My recent post We all knew this day was coming
      Wow, I can't believe you want to take something away from your son.

      What kind of mother are you?
      My recent post These Moments Are What I Love about Being a Mom
      Don't let them get to you. For those of us who know you, we know you are an incredible mom with only the best for you and your family. YOu love your family and anyone can see that. If they can't then forget about them. Hugs--L
      My recent post I have a little guessing game
      Fuck them. Anyone who has to comment on how YOU would choose to parent YOUR son can go eat a bag of dicks.

      I can't stand judgemental folks. They rub me the wrong way.
      This is such a sensitive issue for everyone, on all sides, and I absolutely cannot stand it when things get out of control over it and people start giving each other crap. It comes from both sides (I get as much crap for questioning the idea of a cure as you get for wanting one), and when the shit starts flying, I always want to say to everyone involved, "Just shut the fuck up. I mean it. I don't want to hear any more yelling and screaming from any of you."

      So you have a lot of courage to come out and say how you feel about it. I rarely wade into this one, because it's so difficult to keep things rational. Even though you and I disagree about certain particulars, I completely identify as a parent with wanting to ease your child's pain and I understand that that's where you're coming from. What good parent doesn't want to do that? I've wanted to do that every single time my kid has been in pain over something. It's called loving your kid.

      You don't have to explain yourself to anyone, Jillsmo. Just enjoy your kids and your life.

      And if you're interested, I have a post up on the cure question at:
      http://www.journeyswithautism.com/2010/11/03/neur...

      I'm not posting it to convince you of anything. I'm just letting you know about it so that you know that there are people out here who get the nuances and don't get all hysterical and shit.

      (((((((hugs)))))))

      Rachel
      My recent post Autism in the Classroom- Personal Reflections
      Some of the responses you got made me want to slap myself.
      My recent post Military Spouse Appreciation Day
      Hi, me again...I posted my comment before I read the comments at BlogHer, as I was a little afraid to wade in after seeing your response. I was imagining some of the stuff I've gotten involved in, which was really upsetting, and just didn't want to go there.

      But I see that several people gave what I think are very well-considered responses, so I just want to give those folks credit where credit is due. Not to take away from your own reaction, jillsmo; I understand that it's difficult to have your work out there on a really emotional issue. I just don't want to seem to be casting aspersions on the people who are responding, and disagreeing with you, in a civilized way. The tone of that discussion, so far, is several orders of magnitude higher than some of the crap I've slogged through.
      My recent post Autism in the Classroom- Personal Reflections
      2 replies · active 725 weeks ago
      Rachel I think I need to clarify why I posted this:

      I have no problem with somebody disagreeing with me, particularly in a well considered way. You know me and you know that I encourage people to give me their opinion regardless of whether or not it will be controversial or if I agree with it. It's not that difficult for me to have my work out there on an emotional level, to tell you the truth. I've been at this online thing for a LONG time and as long as people are respectful, I'm happy with disagreement.

      What I DO have a problem with is people who don't read what I actually wrote, who formulate an argument that I didn't make and then attack me for something I didn't say. That I have a big problem with.

      This post isn't for what anybody said over at BlogHer or even what was said on Facebook, this post is for the people who commented HERE.
      Oh, fabulous. "Conversation Badgers." If only we could just lock them all in a room with one another. Or invent a repellant! Isn't saying you wouldn't give your child an "autism pill" kind of like saying you wouldn't get your child eyeglasses because "if they weren't running into the furniture they just wouldn't be the child they were meant to be"? I always thought of that when anyone questioned my giving my son medication for his ADD. Don't let them "badger" you. I'm sorry. I couldn't resist. Probably too much wine...
      My recent post Geewhosresponsibleforthesefontsmail
      You scare me when you use bullet points.

      Btw, fuck the lazy haters.
      My recent post Oprah &amp Aimee
      Okay, I can also see that a couple of times, there are assumptions being made about what you said, and I can understand why that pisses you off, but I don't read a lot of hostility coming from the people involved, and I don't read any conscious attempts to diss you. I just see people disagreeing with you and challenging what you say, and coming from their own place about it -- which, given the crap autistic people have to deal with constantly, is a very passionate place.

      I do see a ton of hostility in the comments to this post, however, directed at the people disagreeing with you.

      It sucks when autistic people and autism parents end up in these kinds of conflicts. It saddens me no end. It's a complete, full-out breakdown of people to see the perspective of the other. It's not just on the autistic side. It's on both sides.

      This is why I don't get involved in these cure discussions. They always end up in this place, and it depresses me no fucking end. So I'm going to bow out now.
      My recent post Autism in the Classroom- Personal Reflections
      1 reply · active less than 1 minute ago
      Rachel I agree and I'm sorry this depressed you. Thank you, as always, for your input. I value it VERY much. :)
      This is all missing the big issue with jillsmo. I mean, let's get the animal rights people. I remember her running over ducks, and celebrating this with a blog post. I also, just this week, read about her dooming a poor injured bird to a long, painful death. Let's focus on the real issue; the birds.
      My recent post Broad Autism Phenotype
      6 replies · active 724 weeks ago
      DUDE! The duck was FINE. And, um... it was actually the CATS that killed that bird. And you can't prove otherwise.
      Remember, the internet is forever. You had tacit approval of the bird's death. Like Seinfeld, how they ended up in jail watching a guy get mugged. Except without the mugging. More like bird murder. And I kinda didn't read the end of the duck post.
      My recent post Broad Autism Phenotype
      You BASTARD! If you didn't read the end then you missed my awesome artwork!

      I'm not sure we can still be friends.....
      Went back and reread the post for the first time. Which isn't really rereading, but reading. And I saw the artwork. There goes 5 minutes of my life I'll never get back.
      My recent post Boy With No Pants On- part 2
      Hi again. I'm sorry that my comments frustrated you, but I promise that I did carefully read what you said -- I just didn't agree with it. I didn't want to "attack" you, either, just to express my disagreement.

      Having an inside perspective on autism, I consider it a fundamental part of me and would never want to get rid of it. You say that your son would still be the same person without autism, only less disabled -- but, given how pervasive autism is, I don't think that's possible. In my opinion, if this magic pill existed, anyone who took it would become a completely different person than they were before they swallowed it.

      I'm sort of surprised by how mad people are that anyone would show up here and disagree with you (people commenting saying "fuck the haters" and all that). I'm not saying you're a bad person -- I'm just saying that when people talk about autism and whether it's a good or a bad thing, they should pay attention to what autistic people think about that.
      1 reply · active less than 1 minute ago
      Hi Zoe! Thanks for coming back. It just felt to me more that you hadn't read what I wrote more than that you were just disagreeing with me. I appreciate you returning to clarify that.

      I also appreciate your insider's perspective on autism, and you're right, it's entirely likely that after the magic pill he wouldn't be the same person; that's the difficulty in arguing about something that doesn't exist, we have no actual facts or data we can point to in order to prove our theories; it's all just unproven theory based on experience and instinct. I trust your insider's perspective as much as I trust my friend Rachel's insider's perspective (she's up a few in the comments there). I just know my son, really well, as we all know our children, and that is my gut instinct on the issue. I could be wrong, and my greatest wish is that one day he will be able to tell me that I AM wrong. I think it's possible that one day he will, and one day he will school ME in the ways of neurodiversity, and I will be his biggest cheerleader, like I am today. I just want him to be happy, and if the theoretical pill would make him happy, I want him to have it.

      And, yeah, I have some pretty loyal readers, many of whom have children who are not as high functioning as my son. We're kind of used to getting attacked by people who (usually anonymously) make some pretty harsh personal attacks about the quality of our parenting, so when it seems like there may be a "hater" in our midst, we tend to rally. You are obviously NOT a hater and I apologize for that (while at the same time really happy that I have such good and loyal friends, to tell you the truth).
      I think you have EVERY right to post your thoughts about Autism and what you'd do in a magical universe if you could. You are the parent of a child on the spectrum. Your experience, while shared with countless others, is still unique to you. Of course you would want to make your son's life better. I think that you were courageous in your post and it bugs me to a huge extent that people are giving you shit for your thoughts. Especially without reading and fully understanding what you had to say.
      Fitting that I find this post again on Mothers Day. The first time you posted I said yes I would give her that pill. My daughter is 3, nonverbal, and sensory seeking like no other. Her ability to not communicate frustrates her so much that she hurts herself or others around her. It does not make her quirky or a unique part of her personality. As I've watched her react to the stresses she's had the last few weeks I once again whole hardheartedly say again "Yes I would do anything I could to take her pain away." Taking away your child's pain does not make you a monster or horrible parent. It makes you caring, thoughtful, have empathy for their needs and a whole slew of other describers that are positive.
      My recent post Friday Update
      I am with you and beyond. I think, ultimately what we are saying is all about love. I simply do not understand how adults with autism could get the idea that parents of children with autism would not respect and feel a special bonding with them when we see and live the difficulties of the disability every day through our kids. Somehow that hypothetical desire to help our child gets turned into not respecting those who have accepted their own paths. I think there are paths of peaceful understanding. We can walk next to each other, share our perspectives, give each other a hand now and then and walk our different directions with respect and kindness.
      My recent post Play

      Post a new comment

      Comments by